You are cordially invited:

to my pity party.

When: right now

Time:  I said right now.

Where: where ever you are sitting.  If you are on some tropical beach…why wasn’t I invited there…and why in the world are you on the internet.

Why:  Because…just because.

Today we started phase 2 of operation (pun intended) Evan.

We met with the craniofacial team at Children’s Medical Center…again.

We met with them when Evan was still safe in my tummy.

We met with the surgeon when Evan was born.

We met with the surgeon again when Evan landed in the hospital before his first heart surgery.

The surgeon…he’s a patient man…repeatedly said they couldn’t work on his cleft until his heart was stable.

And we’re there.

Our heart surgeon and cardiologist have all given their blessings to proceed with his cleft repair.

I’m torn on this one, friends.

There was a moment in time when I found out about Evan’s cleft that I was afraid and ashamed of how I felt.

I remember thinking…”Could I love my son that wasn’t going to look normal?  What will people think of me when they see him?”

Pretty crappy, huh?

But man, oh man.

I had those questions weigh on my heart….I was even worried while I was pushing Evan out.

And then I saw him.

And I knew then…I couldn’t love a face more.

Now…that stinkin’ face…the smile that goes for miles…the smile that literally stretches from ear to ear…is on it’s way to getting repaired.

It’s going to be a very hard surgery.  Total time could be up to 6 hours.

This is just the first of many, many, many surgeries for his face. These will be painful…for him and for us to see.

He’ll be in so much pain.  And unlike his heart, we’ll be able to see it.  Really see it.

Then…we’ll face his palate repair…in about 6-8 months from now.

And if all goes well…we won’t have another cleft surgery until he’s in elementary school.

But, the road will be long…just like the road for his heart.

So, why the pity party.

I’m just so upset for him.  For the next round of pain he’s going to have to deal with.  For the moment I have to hand him over…again…to a group of doctors and ask them to protect him and to please return him to me better than when they take him.

We also are starting aggressive feeding therapy starting tomorrow to get him to eat everything by mouth.

The reconstruction of his nose will not allow for the feeding tube to go in through his nose (called an NG tube) because of all the work that has to be done.

If my boy doesn’t show progress and that he can’t take in the amount of formula he needs to sustain and grow….we’ll be meeting with a Gastroenterologist (tummy specialist) to talk about placing a tube that goes directly into his stomach for feeds.

Yup…another surgery.

Yes…you get it now…now we’re on the same page.

So, glad you could make it to my pity party.

Craig and I call his cleft lip and palate the bull sh*t defect.

The heart…we’ve come to terms with his special heart.

But, the cleft lip and palate….ugh…it’s just a nuisance of a problem.

It sucks…and my boy can’t because of it.  So, the feeding problems.  So, the long hard road…just made harder, longer and more difficult.

Stop people.

I can feel some of you praying this away as I type.  I can feel clarity arising. I can see purpose as my boy laughs, chews on a Mum Mum…

Stop it please…

I want to have this pity party.  I want to relish in my agony.  I desperately want to feel sorry for myself.

Can you please stop already?  Stop with the prayers?

Ugh.

Ok…I see it..I feel it.

My boy’s special face has taught me to see other’s through the eyes of Christ.

I know how to love now because of him.  He’s shown me beauty in ways I never thought existed.

The feeding tube that I loathe…I also love…it got him fat and kept him healthy…it made him strong for his open heart surgery…that he ROCKED!

We are now forced to get him to eat…we are on a time crunch…that means we push him…that means if he’s pushed…he may get there…

We are now another step closer to him living normally.  Him having a normal….the normal I prayed for.

I prayed so hard for this day.  So hard.  Because I knew that if we got to this day…my boy survived open heart surgery.

And he did.

And he’s here.

So, return the streamers, the balloons that say, “Life Sucks”, the plates of fattening chips and dip (ok..you can keep those here).

Because, pity party is cancelled.

I had my moment of “woe is me” and now  need to focus on “Whoa is He.”

My God got my boy to this moment…and that’s all the reason to rejoice.

Party cancelled…unless it’s for celebration that we made it Phase 2 of Operation Evan.

Unless it’s for the celebration that my boy WILL be able to get his oral skills up to par so we don’t have to get a G-tube (pray for this)

Unless it’s for a celebration that my boy WILL have a successful cleft lip surgery where he’ll be protected during the procedure and he’ll have a smooth and uneventful recovery (pray for this).

Unless it’s for a celebration that we’ll GET to have more surgeries for my boy…because that means by boy is alive…has survived another surgery…and we just get to GET to the next one.

Ok…let’s celebrate those things.

Let’s party.

 

 

 

Comments

  1. I am utterly amazed at what you do! You are an incredible mom.